A few weeks ago, KindTree - Autism Rocks published a news item forwarded from "Asperger Experts". These young men have started a company marketing a "New" approach to dealing with people on the autism spectrum. It sounded pretty good to me, but I forwarded it to our own local expert David Olson, facilitator of KindTree - Autism Rocks "Self Advocacy" discussion group. He in turn shared it with a more active than this one discussion group. Below are few excerpts from that discussion, and the whole thread is here.

What do you think?

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from one fellow:
I did not watch all of the first video nor any others at all, but I think I got the jist. I think this video has a place for some very young, perhaps adolescent autistics. So many are now raised as "DISABLED" that learned helplessness is a major issue. These basic social niceties escape them. This guy may have been such and found the path out. More power to him and anyone he helps! Autonomous Autistics Arise!!

I often find that special educators "LOVE" their kids - as long as the kids stay in the "DISABLED" box. If they mature, make something of themselves, and crawl out of the "DISABLED" box into the "MAINSTREAM" box, it freaks people out. These are the people I work with.

I work on two teams of 4 therapists (and only I swing between the two) to cover all of the medically fragile babies birth to 3-years in the 5th largest county in the US and an additional smaller county. I have to help these two busy teams learn how to work with me and me with them* in addition to getting our job done. 

The things that seem to be working for me are:
1. One of the team members quickly became my ally. She recognized I was autistic (most people just assume I am an irritatingly passionate oddball). Since then two more team members have joined "team Janet". This is an absolute 1st for me**

2. I bring my little-professor, powerful narrow-interest-level-knowledge and expertise to the teams - a valuable commodity. Once I get the gestalt of something, the details I can remember astound them. The autistic brain is a thing of beauty!

3. My allies help me interpret interpersonal interactions and help the others not yet on "Team Janet" understand that I mean well, am actually kind and helpful, don't hang on to negative emotions, and have high value despite my unexpected "packaging". 

4. People just need to give me overt feedback without emotional overoad. 

This may sound like a burden, but it really amounts to a few quiet words in passing here and there. 

Thoughts on Person-First Phrasing

“Person with autism.” We've all been taught that this is the politically correct terminology. The stated reason? It's important to establish that you're talking about a person before anything else. That sounds nice and accepting, doesn't it?

The big problem with this rule is that I don't remember “people with autism” being consulted about it. It is reasonable to assume that a group of people might have an opinion on how they are to be referred to. I'd like to state some of my opinions on it.

Before I continue, I want to stress that what I'm saying here is my opinion and nothing more. I've talked to several autistic people that mostly agree with me, and I've also talked to some who don't. I don't mean to present this as a representative opinion of the entire autistic community. Only as a way to start a discussion.

I'll go ahead and get the obvious part out of the way first. The label can, and probably should, be left out unless it's relevant. Similarly, you wouldn't refer to a person as neuronormal if it isn't relevant.

Now, the real question is when the label is relevant, do you say “autistic” or “person with autism?” The honest truth is that either one can be acceptable. The most important thing is that you speak with respect to the people you're talking about, and that they are not seen as being anything less than full human beings. If you can do that, I don't really care which one you use.

If you've been reading from the beginning, you most likely would have the impression that I have something against the phrase “person with autism.” Here's why. As I said before, the reason given is to establish that you're talking about a person. I'm not exactly comforted by the thought that some people have to remind themselves that I'm a person when they talk about me. I feel that it's a sign of a deeper problem that a simple change in terminology is unlikely to change.

The other reason I'm not fond of person-first phrasing is that it tends to reinforce the idea that autism is akin to a disease. That there is a normal person trapped inside a shell of autism. This is simply not the case. No matter how functional a person becomes, the autism will always be there.

My preference is “autistic.” When something runs as deep as how your brain is wired, it's hard to separate it from the person. Autism isn't simply a set of behaviors. It affects how we think, how we process information, and even how we sense the world around us. It's a part of who we are, and that will never change.

I do understand that there are people who disagree with me because they don't want to be defined by their autism. I completely respect that, and, in fact, I don't want to be defined by it either. However, I don't feel that the answer to this is to go to person-first phrasing. I think the answer is to simply bring it up when it's relevant and not mention it when it isn't.

In conclusion, I believe the most important thing is to see autistic people as people. That should not require stating it before the label, in much the same way that you don't talk about people with homosexuality or people with blackness. Person-first phrasing does not always promote person-first thinking.

I am posting this article, written by David Olson, for the KindTree newsletter "Reaching Out - Reaching In". You can access the complete newsletter here: http://www.kindtree.org/html/newsletter.html  I think it's a great article...

Autism Acceptance Month by David Olson

April has been celebrated as Autism Awareness Month since the 1970’s. This, among other things, has made autism into a household word, and has brought into being much research and supports for those who experience autism. Many people are recognized as autistic who may not have even been considered for a diagnosis prior to this increased awareness. It has even caused autistic people to come together and find our own voice.

However, I believe that awareness only goes so far. It does little to ensure that the research being done is helpful to autistic people that currently need supports. It also does not ensure that the supports and therapies offered are actually helpful, nor that they do not cause harm to those they are intended to help. Awareness does nothing to reduce the stigma that comes along with autism, and it does little to make the voice of the autistic community heard.

In 2011, the Autistic Self-Advocacy Network (ASAN) proposed simply changing one word to address these shortcomings. Change awareness to acceptance.

The core principle of acceptance, of course, is to reduce stigma. We in the neurodiversity movement wish for all autistic people to be able to celebrate themselves as the unique individuals they are. Only through acceptance and comfort with ourselves can we strive to achieve our full potential.

I believe acceptance has much farther reaching potential than just that, though. By listening to the wants and needs of the autistic community, research can be directed toward more useful goals. Supports and treatments can be improved with greater insight into the autistic mind. Communication between autistic adults and parent communities can and does promote a greater understanding of autistic children, as well as creating more effective parenting methods.

Please join me this April in celebrating Autism Acceptance Month. If you are autistic and willing to talk about it, talk to people about autism. If you are interested in autism, talk to an autistic person, and don't be afraid to ask as many questions as come to mind.

Share this wherever you can. Together, we can better understand each other and make a better world for us all.